Autism by Hand, Lorca Damon, eBook 2011; an Extended Review

1% I never wanted to write this book. I can’t write this book, it hurts too much. But I have to because this book wasn’t there when I needed it. It’s not a human-interest story or a self-help book or an instruction manual on how to raise an autistic child. It’s simply a well-thought-out laundry list of everything I did to help my daughter be the best person she could become and I did it in the dark because this book wasn’t there for me.

My daughter, Carrie, was diagnosed almost seven years ago. With everything. PDD-NOS (Pervasive Developmental Disorder, term now used interchangeably with ASD ), (ASD) Autism Spectrum Disorder, Static Encephalopathy (brain disorder which may or may not be permanent), Bipolar Disorder (experiencing periods of unusually elevated or depressed moods), and in the words of one specialist, Full-Blown Autism. I didn’t even know that last one was a real medical condition.

Fortunately, Carrie was very young when she was diagnosed. She was barely thirteen months old when her pediatrician first mentioned that he was concerned about the fact that she wasn’t reaching her milestones. The fact that she wasn’t able to walk, talk, drink from a cup, or sit up without help should have worried me, too, but she was my smiling, pudgy little baby and I wasn’t very concerned.

It wasn’t until a different doctor voiced his concerns that I really began to wonder.

Over the next several months we saw professional after specialist after expert until finally we were given a final diagnosis: Carrie was somewhere on the autism spectrum and none of the specialists we saw seemed to think she was anywhere close to the high-functioning end of the arc.

Like most parents in my situation, I dove in head first in trying to find out everything I could about autism and how it was going to affect my child.

I didn’t need to know the scientific history of autism, I needed to know how to potty train my daughter. I needed to know how to teach her to talk or what to do when the day finally came that she had to go to school or had a crush on a boy or got her period. Was she every going to have a job, a checking account, and a car payment? All the research that was being done to make discoveries down the road didn’t help me with my daughter’s struggles today.

I am, however, a teacher and a mother who has been there, so this book is simply the strategies that I learned from working with my autistic child.

2% I’m basically telling you like it is the way your best friend would if she wasn’t worried about hurting you and if she didn’t feel like she doesn’t have the right, just because she doesn’t have an autistic child.

It’s time for tough love: your child is autistic. Stop saying he’s “a little bit autistic,” or my favorite, “he’s somewhere on the spectrum.” We’re all somewhere on the spectrum! We’re at the “not autistic” end! And please stop referring to you other children or your autistic child’s classmates as “neuro-typical.” They’re normal. Your autistic child is not. There I said it. Now we can move on.

4% Toolbox. Here are the things that I kept on hand for working with Carrie. Some of these might be godsends for you, some of them might be the stupidest thing you’ll ever try. Nothing here costs more than $20 so try it if you think your child will respond.

Mirrored wrap-around sunglasses, the bigger and the cheaper the better. You might want to get a few pairs of these glasses because some of them are bound to get broken in all the play. The point of the glasses is actually very simple. When you put them on they look kind of weird, which attracts you child’s attention, but when he looks at your glasses he will see himself, which is kind of intriguing. More importantly, the glasses are blocking out a large portion of the overwhelming information that is provided by the human face.

When my glasses were not handy, I have even just planted myself in front of my daughter and talked to her with my eyes closed, just so she wouldn’t be so overpowered by the intensity that is the human eye.

Several pairs of white gloves (winter kind, hardware store kind, jazz hands kind, doesn’t matter, so long as they’re white so you can write on them and light-weight enough that you won’t feel stupid wearing them everywhere you go for the rest of your life. I’m kidding. No, I’m not.) the title of the book came from the use of my hand as a visual teaching aid to my daughter.

< My Thoughts > “… talk to the hand…”

When Sonny was younger, he would hold his hand up in front of his face and babble away at it. So talking to the gloved hand would be perfect for him. Smiles.

5% I would show her with my fingers how many words she had to speak. When she was screaming she could watch a countdown on my fingers of how much longer she could scream.

The gloves will be the calendar, the clock, the countdown timer, and more. So stock up. Before I thought to use gloves, all of this was written on my fingers in Sharpie. After I finally thought to use gloves so I would look less stupid with a hand-drawn Technicolor tattoo on both hands, I literally kept all my gloves clipped to my belt loop with a carabineer hook so they would be handy a million times a day.

Yoga ball. A lot of autistic kids DESPISE being off balance due to their weakened proprioception and vestibular senses. So slap him up on that ball and bounce him till his fears go away. I’m just kidding, sort of. The yoga ball will be vitally useful when it comes to physical therapy, occupational therapy games like catching and throwing, and processing verbal commands like, “Roll the ball to me! Now roll it to Daddy! Now roll it to the couch!”

6% El cheapo plastic cups in rainbow colors, but all alike, and maybe five cups of each color. I don’t mean the disposable kind.

We stacked them, we kicked them with our right foot and then our left foot, we placed small objects carefully in each one, we lay on our backs on the floor and balanced them on our noses, we walked with them on our heads. They are absolutely limitless.Wooden puzzles of everything under the sun. Enough said. Wooden puzzles hold up better than cardboard, and the pieces make a really satisfying clacking sound when you play with them. Plus we had ones with large, chunky knobs for handles on each piece.

Stacking blocks, preferably the old fashioned wooden kind. Same as abouve. They make a great noise; they’re very durable, and generally inexpensive. They can be stacked, counted, have numbers and colors on the sides. They can be named and counted. The possibilities are endless.

< My Thoughts > “They can be stacked…”

Whether it’s for a test to see if the child has met certain fine motor skill milestones, or for Psychological and Cognitive assessment tests, someone may ask your child to stack blocks.

The expectations are: 12-16 months = stack 2 blocks

16 -18 months = stack 3 blocks

18-24 months = stack 4 blocks

22-24 months = stack 6 blocks

23-26 months= place 3 blocks in a row and push like a train

28-31 months = stack 3 blocks trying to make something

32-36 months = stack 9 blocks without them toppling over

Retrieved from: https://www.pinterest.com/adammila/pins/

6% This one’s tricky… a stuffed animal. Once you know which one your child prefers, you have to immediately run back to the store and buy up all they have… in case something happens to it. A stuffed animal is far less threatening than a person. You will literally be able to teach him how to play with others, take turns, have a conversation in line at the grocery store.

7% Bubble liquid and every known contraption for making bubbles. They’re awesome!

< My Thoughts > “Bubble liquid…”

The voice of experience cautions… When using bubble liquid be hyper-vigilant to make certain that liquid doesn’t find its way into eyes, mouths, etc. Plus the bubbles move fast and younger kids tend to chase them, falling or slipping on wet surfaces. Just saying!

9% We were in the car and once again she barked a one-word demand at me: “Music.” I had already been through a full day’s worth of headaches because at day care another child had a birthday celebration and Carrie is afraid of the Birthday song. Now she wanted the car stereo on. And I lost it. I held up my open hand where she could see it from he car seat and yelled, “You know how to speak! You will say five words to me or you will have nothing!” She was startled into silence for just a minute, then said, “I want music now please.” The whole concept for everything I’m telling you was born because I refused to let her do her own thing. This is my world, and the rest of my world doesn’t care if you’re autistic.

Specialists and educators wanted Carrie to try the little laminated pictures so she could just point to what she wanted. That just wasn’t enough for me, but more importantly, it wasn’t enough for Carrie. This all goes back to my earlier explanation that the world isn’t set up for your child to succeed just yet. If you adopt the attitude that your child can’t do any better than THIS, then that’s exactly what will happen.

12% If you want a cookie, you’re going to ask for it. If you want juice, ask for it. If you can’t reach your toy, ask for it. Teaching this concept took try –after tantrum-throwing-try and its really tempting to make the screaming stop by just giving her what she wants. I’m sorry. I’m the mama and what I say goes. Don’t back down, this is too important. Note: I’m not speaking about those children who cannot speak. Picture cards or assistive technology are perfect for them.

< My Thoughts > “Don’t back down, this is too important.”

Along with tough love, there are a lot of tough choices for parents. My thought is begin with some form of communication… other than a tantrum… and work up from there. Eventually a child learns to ‘label’ things and you can combine the picture of ‘juice’ with the word ‘juice’ and over time, the child will make the connection. They will say the word before giving you the picture. At that point, you can probably phase out the picture. But, keep it handy, because what s/he was able to do today or this morning… may not be there tomorrow or this afternoon. It’s just the way autism works.

12% If your child is able to repeat lines from his favorite movie, start to notice if he’s using them appropriately. Is he screaming, “This is awesome!” when he goes inner-tubing for the first time? Then with effort we could get him to use different words to express excitement? You never know until you try.

As with all things involved in teaching anyone anything you can’t back down. If your child has to ask for juice to get it at home, but you order soda for him in a restaurant… then you have just told him that speaking really isn’t all that important.

29% Concept of Time… Of all the individual life skills I could have chosen to give an entire chapter to, you might be wondering why I chose this one. In Carrie’s case, her lack of understanding about time has led to more dramatic meltdowns than any other skill. It started from a very, very early age.

30% From very early on, you couldn’t offer Carrie ANYTHING unless you were holding it in your hand because she struggled with both object permanence and time. I’d love to tell you we figured out how to help her with this on a permanent basis, but it is still a struggle for her.

In fact, all I can safely say we’ve been able to accomplish is to help her tone down her reaction to the disappointment of something not happening right now. She still perseverates, meaning you have to tell her 53 times in a row, “Yes, we go to Disney World on Thursday.” Yup, on Thursday.: “Sure thing, kiddo, we go on Thursday.” “Today is Monday, then it’s Tuesday, then it’s Wednesday, then it’s Disney World Thursday.”

This was probably the single biggest use of the gloves in our household. I could hold up my bare, gloveless hand and tell her to say five words, because that’s a counting skill and she eventually mastered that. The gloves, though, had the days of the week, the months of the year, the words “morning” and “afternoon,” you name it. That’s why we owned so many gloves.

32% The visual glove gives your child something concrete to pertain to rather than the abstract concept of time. And nope, he’s not going to get it the first time. He won’t even get it the 40th or 500th time. Practice time techniques, eventually your child will absorb the concept. “We will go to McDonald’s in 25 minutes.” From there, we could talk about bigger things. It is March as I write this, and Carrie knows we’re going on a camping trip to Texas in July. It takes a lot of practice though.

Make sure you set up easy goals so your child won’t have to be patient for very long, then when he’s mastered that you can move the time further and further away.

< My Thoughts > “…set up easy goals.”

As a Special Education teacher and as a parent, building ‘success’ into the lesson or task is sooooo important. Pick a time when it will be easy for your child to comply. An example would be… in two minutes your favorite TV show will come on. Turn on the TV, set the timer and start the ‘count-down’. Having a timer App on your Smart Phone is handy when you are out in the community. Time the child’s favorite song… so that you can say, “When this song ends… you will be able to ‘get up’.” (Or whichever task you are teaching.).

39% Something that has become a concentrated effort on my part in the last two years is taking a keen notice of things that Carrie shows a particular interest or ability in. she is an incredible little artist, but only with the computer. She hates to use a pen or pencil because the little hand grasp is difficult for her. But she can create these really amazing drawings using the computer.

So I’m already looking into graphic design for her. The really important thing for me to remember is that this could all change. She might lose all interest in computers by next year. I have to remain flexible and resist the urge to decide… it may not work out that way. I will admit, it looks really good from here, but the future isn’t set.

In the best of all worlds, educational institutions provide students with Transition Planning concerning work and leisure time activities and training. The Division on Career Development & Transition (DCDT) of the Council for Exceptional Children provide a lot of information on this subject. http://community.cec.sped.org/dcdt/home. The DCDT department gives information on providing career preparation, providing planning opportunities, linking with community agencies, and conducting parent meetings to discuss this subject.

They suggest ‘direct observation’ and data collection. Or at least, parents can do as Lorca Damon suggests and observe their child for possible preferences, interests, and abilities. The article says, mot how the person interacts with other, completes tasks, and initiates new directions. Also, give examples of interests. Child attends and enjoys karate classes at the YMCA. Or, likes performing repetitive tasks in an organized work space. Think about noting possible situation or environmental barriers or difficulties which may be presented. For example, person does not like large, noisy spaces. Or, may never be able to learn to drive a car or independently take public transportation. Keep copies of any assessments and aptitude tests which have been made and know that there are many out to request for your child. Also, keep examples of any work you think may show special talents or creative interests and hobbies enjoyed.

46% As the mother of a child who has serious issues with elopement (determined wandering away), I may have to be a little more paranoid about this stuff than you do. Carrie was three the first time the police found her walking along the highway about half a mile from our house.

47% One of the best things you can do is take the time to go to the police station and the 911 dispatch office to let them know about your child. Ask them to keep your child’s information and photograph. Also to alert firemen or paramedics that an autistic child lives in the home.

That way, if there’s ever a fire, they know to look for a child who may or may not be able to respond to commands or give their location when the fireman asks, “Is there anyone in here?” Autistic kids might hide from the firemen during a fire, so the dispatcher can alert them ahead of time that there is an autistic family member.

< My Thoughts > “Autistic kids might hide from the firemen…”

What fireman looks like when suited up is very scary to most children. During the school year at elementary schools, fire personnel visit the schools and put on an assembly performance showing students how they suit-up. They also let the kids try on different things like the boots, the coat, and so forth. Great experience.

The fire personnel also need to know some things about special needs kiddos so I try to make arrangements to have a private session for my Special Education class. During that time I remind firefighters that trying to get into a dwelling where a special needs child lives may be a challenge. For instance, if the child is an ‘eloper’ then the doors and windows will be double-triple locked and secured. This may require special tools in order to access entry. Then once inside, the child will probably hide from you, or be non-verbal and not be able to tell you where they are.

Many children with autism also have epilepsy and sensory issues. Heat, sound and bright lights can trigger both seizures and panic attacks. Observe behaviors and know that the child may try to run, may spin, rock, run around and may seem to be in pain. Some laugh, hum, sing, remove clothing, or refuse to be touched. Often times, both children and adults with autism do not comprehend pain or danger. Speaking to them in clear one or two word, easy to process commands may work best in this situation. Make certain to pass any information on to those who may be transporting the person to another place.

47% Here’s how we protect Carrie as much as we can in situations where she cannot help herself:

When we go to a place like an amusement park or crowded event, we still use the accordion-rope bracelets that parents have for youngsters. She might look a little weird, but hey, the folks know us.

I have a laminated card similar to the car decal concept, but it’s on Carrie’s car seat. It has her name on it and alerts the paramedics that she has autism. Also they have about eight different phone numbers to call for help with Carrie.

We did alert the 911 office to Carries condition, mostly because she’s getting older and stonger. She may actually put up a huge fight.

We talk A LOT about what to do in an emergency. If your child is able, you can even teach him to dial 911 and lay the phone down. He does not have to interact to get help.

60% When Auburn University recommended I try the gluten-free, casein-free diet (GFCF) with my daughter, it was a hard sell. But my first research into the GFCF diet showed me a few eye-opening things. First, the only thing for sale was a paper copy of all the information that you could read for free. Second, they gave a very unexpected explanation of the logic behind the diet: we don’t have a clue as to why this diet helps. Many people with celiac disease who happened to also be autistic showed a marked improvement in the autistic behaviors when they went on the diet for celiac disease.

The thinking is that these patients are not able to process the proteins gluten and casein very well, and that the brain responds to those proteins by dumping chemicals from the brain that impair the patients. The very first thing this means to you is that it is not going to help every autistic person, only the ones who are not fully able to process those proteins. The second thing you should understand is that it will not hurt your child to give it a try.

62% Carrie has been on the GFCF diet since she was two. She is just as autistic as the day we first fund out. However, there are certain behaviors that were greatly improved, mostly things like her verbal skills and her ability to interact with us. Carrie cried for a day or two, when we began the diet. Her routine was interrupted and she probably felt a little weird. On the fifth day Carrie put all of the alphabet magnets in order.

< My Thoughts > “…we began the GFCF diet.”

According to Pennesi, et al. (2012), parents reported that they implemented the GFCF diet when their child has several physical symptoms. These were Gastro Intestinal symptoms such as diarrhea and constipation; food allergy symptoms, including red cheeks, red ears, rash or red ring around the mouth; hives, dark circles under eyes, sneezing, stuffed nose or itchy and watery red eyes.

Researchers found that these children had a ‘challenge’ with food proteins from gluten, casein, and soy, compared to non-symptomatic, non-autistic children. They found that after several months on a gluten-free and/or casein-free diet, parents often reported a decrease in hyperactive behavior. They also reported improvements in their child’s ability to focus, and decreases in sleep problems.

Yet another publication believed that some studies “may have led to an overestimation of this association” between the GFCF diet and unwanted behaviors. Others Patel & Dupont (2015) felt that children and adults with autism should have probiotics, prebiotics, and/or synbiotics added to their diet as an added ‘health benefit.’ This treatment is commonly known ‘Bacteriotherapy’ and is commented on under CAMs (Complementary & Alternative Medical Treatments); found on Home Page Navigation Menu as: #4C Look Into More Programs.

62% The diet did not suddenly make Carrie brilliant. It did not cause her to become a genius. What most likely happened was Carrie, at age three, had been hearing the alphabet all during the time our family worked with her sister and the diet helped ease the fog that was keeping her from caring.

67% Decide how long you are going to try this diet to see if it “works.” We set a completely arbitrary limit of one month. During the first month we saw some improvement, so we kept extending the time limit.

99% I don’t let myself think about tomorrow, or next year, or when I’m eighty-five. If I do, I’ll miss out on the amazing things that are happening today. Today my daughter told me she loves me. Today she tried to pick out her own clothes. Today she came home and told me something she did at school without me having to play Twenty Questions. It’s not huge, but for today, it’s enough.